Visiting my Anti-Vax Mother and a Bunch of Other Stuff

[AylaM]

@1ForAll it brings me a great deal of comfort to read your wife has such a similar experience to me. I know it’s illogical to think this, but it has felt like everybody on the planet has interests but me.

I was also incorrectly diagnosed in my teens as someone with Borderline Personality Disorder, Depression and Anxiety. I always knew those terms didn’t fully encompass my experience, which lead me to years of absorbing self-help material, which lead to a lot of self-analyzation, which lead me to discover I am Autistic. I recently went in for a private diagnosis, so it is official that I have Autism at least. I am really considering going back to the same person who has an interest in ADHD, to see if he thinks I also have that. There was a screening for ADHD within my Autism assessment, although it was just an answer sheet which didn’t provide a full picture of my struggles. I also don’t think I present outwardly as someone with obvious ADHD, at least in that sort of a setting.

I think if I went back for an ADHD assessment, I would do a similar thing to that which I did for my Autism assessment, which was writing around 20 pages of notes about life events pointing to Autism. It was actually a lot more than that, I included sections on my younger years, behaviours, interactions, processing, transitioning, task initiation/completion, school, naivety, concerning events/behaviours, theory of mind, motor function, food and exercise, physical health, head injuries, mental health, sleep, sensory sensitivity, repetitive behaviours, and special interests over time. I also included a transcript from my mother, notes of her own, and all of my school reports. The assessor took about half an hour of the assessment just reading my notes and asking the occasional question, before performing the ADOS 2 assessment. He was very impressed with my memory and that I’d written all the notes myself.

I can’t help but feel quite disappointed that the public mental health system I was engaged in for years missed the obvious signs, both in the child and the adult systems. I have gone back through my notes from that time and can see written plain as day, things that point to the possibility of Autism. I know many people get diagnosed much later in life than I do, but it is still sad that I could have received help much earlier if my parents had pushed for it, and if the public mental health system was better equipped and funded properly. Another thing I can’t change, but I do wonder what life would have been like anyway.

I agree I should be focusing my energies on my own problems, on things I can change. I used to tell people when everything is crap, to find one area of your life you do have the power to change, and to focus all of your energy there. I used to follow that advice to a degree too, but right now it’s tricky. We are all allowed to have hard times and maybe it is my resistance to this that is part of the problem – perhaps me wanting the difficulties to end so soon is exactly what is perpetuating them, because I haven’t ridden them out and let them be. Or perhaps I’m resisting the good parts too, that I do know a bit of stuff and I can do a few things, and my refusal to acknowledge this stifles any chance of it becoming more.

When I read over what I write when I try to explain my difficulties, there are so many “extremes” used, like:
“nothing”
“everything”
“don’t”
“can’t”
It's like I’m blocking any room for things to be better. Maybe it’s because that thinking is so comfortable after having to think like this my whole life, out of fear. To change that thinking, I’d need to get my fear under control, I’m not sure how to do that. It feels like cheating in a way to use medication, but I feel like if I could get myself in a place where I am only having one or two thoughts at a time rather than many more, I could focus my attention away from panicking and onto doing things I want to get done. Then I would have action-based evidence behind me showing me differently to how I have always thought.

Yes, I’m very fortunate to live with the people I do/did. It’s just me and the landlord now (who is also my support person) as my housemate has just moved closer to town, which has been hard but I can still see her regularly as she’s only 20 mins away. I see a lot of Autistic traits in my landlord also, but he isn’t very interested in pursuing the idea, however he is very supportive of our journeys.

When it comes to interreacting with people, I am polite to and considerate of all, but I am extremely picky about who I voluntarily give my time to. I wouldn’t touch people like my mother with a 10ft pole if I had the choice, but with mum I don’t, and I want to spend the rest of their lives loving them, not hating them (which was how I used to feel, and I’d avoid them completely). I do agree with what you said, and I will continue to spend my time with more considerate and open-minded people.

I think I must be exactly where I’m supposed to be, and when I’m ready, I will change. I will most likely be ready once I understand things a bit more, and writing them out here to you and to others is helping a lot. So thank you for reading and sharing about your wife, and to everyone else who wrote to me too. It is nice and unfamiliar to feel supported by several people at once.

 

[1ForAll]

@1ForAll it brings me a great deal of comfort to read your wife has such a similar experience to me. I know it’s illogical to think this, but it has felt like everybody on the planet has interests but me.

I was also incorrectly diagnosed in my teens as someone with Borderline Personality Disorder, Depression and Anxiety. I always knew those terms didn’t fully encompass my experience, which lead me to years of absorbing self-help material, which lead to a lot of self-analyzation, which lead me to discover I am Autistic. I recently went in for a private diagnosis, so it is official that I have Autism at least. I am really considering going back to the same person who has an interest in ADHD, to see if he thinks I also have that. There was a screening for ADHD within my Autism assessment, although it was just an answer sheet which didn’t provide a full picture of my struggles. I also don’t think I present outwardly as someone with obvious ADHD, at least in that sort of a setting.

I think if I went back for an ADHD assessment, I would do a similar thing to that which I did for my Autism assessment, which was writing around 20 pages of notes about life events pointing to Autism. It was actually a lot more than that, I included sections on my younger years, behaviours, interactions, processing, transitioning, task initiation/completion, school, naivety, concerning events/behaviours, theory of mind, motor function, food and exercise, physical health, head injuries, mental health, sleep, sensory sensitivity, repetitive behaviours, and special interests over time. I also included a transcript from my mother, notes of her own, and all of my school reports. The assessor took about half an hour of the assessment just reading my notes and asking the occasional question, before performing the ADOS 2 assessment. He was very impressed with my memory and that I’d written all the notes myself.

I can’t help but feel quite disappointed that the public mental health system I was engaged in for years missed the obvious signs, both in the child and the adult systems. I have gone back through my notes from that time and can see written plain as day, things that point to the possibility of Autism. I know many people get diagnosed much later in life than I do, but it is still sad that I could have received help much earlier if my parents had pushed for it, and if the public mental health system was better equipped and funded properly. Another thing I can’t change, but I do wonder what life would have been like anyway.

I agree I should be focusing my energies on my own problems, on things I can change. I used to tell people when everything is crap, to find one area of your life you do have the power to change, and to focus all of your energy there. I used to follow that advice to a degree too, but right now it’s tricky. We are all allowed to have hard times and maybe it is my resistance to this that is part of the problem – perhaps me wanting the difficulties to end so soon is exactly what is perpetuating them, because I haven’t ridden them out and let them be. Or perhaps I’m resisting the good parts too, that I do know a bit of stuff and I can do a few things, and my refusal to acknowledge this stifles any chance of it becoming more.

When I read over what I write when I try to explain my difficulties, there are so many “extremes” used, like:
“nothing”
“everything”
“don’t”
“can’t”
It's like I’m blocking any room for things to be better. Maybe it’s because that thinking is so comfortable after having to think like this my whole life, out of fear. To change that thinking, I’d need to get my fear under control, I’m not sure how to do that. It feels like cheating in a way to use medication, but I feel like if I could get myself in a place where I am only having one or two thoughts at a time rather than many more, I could focus my attention away from panicking and onto doing things I want to get done. Then I would have action-based evidence behind me showing me differently to how I have always thought.

Yes, I’m very fortunate to live with the people I do/did. It’s just me and the landlord now (who is also my support person) as my housemate has just moved closer to town, which has been hard but I can still see her regularly as she’s only 20 mins away. I see a lot of Autistic traits in my landlord also, but he isn’t very interested in pursuing the idea, however he is very supportive of our journeys.

When it comes to interacting with people, I am polite to and considerate of all, but I am extremely picky about who I voluntarily give my time to. I wouldn’t touch people like my mother with a 10ft pole if I had the choice, but with mum I don’t, and I want to spend the rest of their lives loving them, not hating them (which was how I used to feel, and I’d avoid them completely). I do agree with what you said, and I will continue to spend my time with more considerate and open-minded people.

I think I must be exactly where I’m supposed to be, and when I’m ready, I will change. I will most likely be ready once I understand things a bit more, and writing them out here to you and to others is helping a lot. So thank you for reading and sharing about your wife, and to everyone else who wrote to me too. It is nice and unfamiliar to feel supported by several people at once.

Thanks for your nice reply. I feel, in general, many women may often get categorized by medical persons a bit too quickly. My wife was originally given the GAD, Depression and Borderline diagnoses (twenty five years of such) and so she relates there as well. I posted about that much earlier, and they likely gave those because she was a female who at that times showed intense worrying ways, anxiety and emotional issues, and as Autism and ADHD are more diagnosed in men and boys. As well, often when a diagnosis is given, often future doctors just keep passing down that diagnosis, even if they do not necessarily agree with such. In other words, I think medical persons may sometimes be lazier in diagnosing women, and quicker to assign a more common label, rather than wanting to do more work, going against the grain for lawsuit fears, and/or to see if some more male diagnosed conditions could fit. Certainly, you could have both conditions mentioned, as our youngest has both such conditions, and as some traits could seem more Autistic, whereas other ones more ADHD/ADD.

In your case, it's great to get at least one diagnosis that you feels explains things, and this could explain most of your things even. My guess is growing up your parent(s) did not either focus on the causes of all your unique differences and difficulties, or they, themselves, were not into details, could not think rationally to put two and two together, or could it be one or more did not want to admit they could have caused you much distress? Or perhaps they were anti-treatment, or too busy to show real care, or not prioritizing there? I just know, I as a very vigilant parent easily saw all of our child's difficulties starting from age eighteen months and onward, and they were so atypical and so many and caused us parents so much anxiety, that we had no choice but to be proactive and find answers that could explain things better.

Unfortunately, from what we saw though through our many experiences, general doctors and pediatricians were often clueless about understanding early possible signs of Autism and ADHD/ADD. And perhaps they were getting pressure to delay diagnostics because of their rigid protocol or from other professional input because of coding or insurance reasons, or as they rather spend less time on screening for such, assuming something else likely was the cause or that can be figured out later.

My wife seems to lack many interests because she worries too much about everything. She often is trying to control the uncontrollable, and she asks hypothetical questions to future events that may not even materialize. I mean, she worries about things that may never happen in that negative way she expects, or she wants positive results to some future worry before being able to calm down. As positive and friendly often she is on the surface to public others, inside thus is a person who has lots of past, present and future anxieties, fears and worries. Often this causes an inability of her to make informed decisions, and as she hyperfocuses on some item she feels is more important. My wife's executive function is such it's nearly impossible for her to plan or prioritize properly for many things, and to do things in typical ways, and to the proper timing or to completion. She does not see the need for or importance of most things. She says she is "... an organized mess." For instance, she can seem somewhat organized for compiling and putting medical and government paperwork in separate containers, depending on the date, entity, and location, etc., but in each of those containers there is no rhyme or reason behind the order; things looked disorganized there.

So, in that sense, and in other yet-to-be mentioned ways, she seems to have some components that could fit under both Autism and ADHD. I just know her score for Autism was way higher for her than I, yet most would suspect I as more having an Autism condition than her, based on a quick glance on the surface. But, underneath that exterior, are what medical persons should analyze as well, and as women's symptoms for Autism can differ at least somewhat from guys, and the same for ADHD/ADD. So, testing for similar conditions or related conditions should always be considered, when one was given one of those or similar diagnoses, as medical persons may or may not be correct or complete in their suspected or actual diagnoses.

 

[AylaM]

@1ForAll You’re very welcome. I agree that medical professionals can be a bit lazier when diagnosing women – I remember in session always having the way I was speaking labelled. It’s like they’d spot the obvious things (my previous black and white thinking for example) and only look as far as which box that ticked from their training. They wouldn’t pair that with my constant fidgeting and looking around the room while I speak as a sign for possible Autism.

As for my parents, I think they knew something was different but were comfortable enough just hitting me and otherwise abusing me for the things I did that they perceived to be wrong. I’d be called names, sent to my room, and when I’d slam the door in frustration and confusion they’d come in and hit me again. When I was very small, I used to tell my father “that didn’t hurt!” when he’d strap me with a belt, but that just lead to him doing it harder. I was always told I thought so differently, it’s a wonder they didn’t decide to get me checked out. Perhaps they were afraid of having a child with something “wrong.” I think it’s more likely to be a case of they’d just pray about it and surrender the problem to their God. While I respect a person’s belief in a God, this certainly didn’t help me. I think it's also a case of too many kids in the family to be able to focus on any one. I needed a lot more input than the standard child, and I didn’t even get the standard input because there were too many of us. It was a houseful of teenagers while I was growing up, so attention was often needed elsewhere.

I sound very much like your wife in that fourth paragraph – I always ask “what if…” questions and won’t calm down until the future event has successfully occurred. In my head, every event is littered with things that could go wrong, and I constantly voice these to my support person who in turn is constantly trying to reassure me. Most things go okay in the end, it’s usually social muck-ups I make and feel horribly embarrassed about for a period of time. I don’t know what to expect and so I do things “wrong” and then feel ashamed and very small.

I can plan things to a degree, but I struggle to implement any of them due to the worrying. I also cannot force myself to do things I don’t see the point in, or things I don’t believe in, which is a lot of things so a lot doesn’t get done. A problem with being depressed is many things seem pointless. Oppositional Defiant Disorder has been mentioned, I don’t yet know enough about it to know if it’s a match for me.

 

[1ForAll]

@AylaM - As for black and white thinking, yes, you are correct there too. My wife has what appears to be that, too, and it is likely the reason some gave her the Borderline Personality Diagnosis long ago, when she had impulsive issues and severe depression then, as well, but...those with both Autism and ADHD, and any severer anxiety or other personality condition even, often may have emotional outbursts or temperamental episodes, and what is considered black and white thinking, too. For b/w thinking, this could be seen in many with rigid thinking patterns, regardless if a genetic condition or environmental caused. These persons could be seen as generalizing or compartmentalizing more than typically, because their brain is hardwired to seeing things more in those ways. Many difficulties though can result when things are just seen as fact or fiction, with no middle ground, and especially if limited open mindedness, comprehension, cognitive ability, and poorer executive function is involved, or when important decisions are made because of some impatience, or immediate need to reduce some severe sign or symptom.

What should complicate getting the proper diagnostics is understanding environmental caused signs and symptoms versus genetic caused. Unfortunately, despite all the many great medical professionals out there (I have seen a few), many other psychologists and psychiatrists I learned about seemed to want to make some sort of diagnosis without really analyzing much, but looking at some thing(s) that caught their eye on the surface that fit their quick belief or from textbook information learned, to fit their biases, assumptions, or because as I said before; they may have wanted to satisfy insurances, copy past diagnoses, or to just follow their protocol without going above and beyond their duty, which should have included to see each individual as a separate case, and with equal rights to have everything looked at objectively and thoroughly, including referrals for extra testing if need be.

Your abuse you faced certainly could have caused you to cope in any number of different ways, and so this complicates things of course, in determining what condition(s) you have. Of course your parents seem to have some condition or ailments as well, to have treated/treat you that way, and so a good psychologist or psychiatrist should consider doing just as much analysis there, and not assume how the patient acting in one medical setting says everything, and if parents are ever questioned let's not assume they are always forthright. Too many doctors make important medical opinions and recommendations, based on observations or assuming past medical opinions were correct. It is very hard being a medical professional, I admit that, from all I know, but just as equally hard or more being a patient who feels at the mercy of the medical and other systems who often get things likely just as wrong than right, causing prolonged pain, suffering and/or death for the patients and often their family.

Autism and ADHD/ADD obviously can be passed down from a parent/parents obviously, and certainly very strict, abusive and/or neglectful parents can cause severe signs and symptoms or conditions in their children, teens and young adults as well. Sometimes, a mix of those factors can cause us to be who we are. What you said about your abusive parents is not too unlike my parents. There were fewer times I rebelled, yelled, or disrespected them, after everything built up over time, and to this day I do not trust authority figures. In my case, though, I turned very introspective and withdrawn, and I avoided confrontations mostly during and since childhood, yet my wife admittedly is far more oppositional than I. She is triggered by certain things and cannot take on any more problems than she already has. I mean, she can act nice and friendly to anyone, and that and being hyperactive and inwardly anxious is her baseline, but if others cannot help her in some way, with regards to her needs, or relate or understand in some big ways, I admit she loses interest fast or if triggered can get into confrontations with them or seem opinionated or highly emotional. But, those close in her circle she is very loyal and wishes she could do more. For everyone else, she is not motivated or able to put forth that time or energy.

What makes things odd is that, despite my wife and my bigger differences in expressing and behaving, she and I get along well for the most part. Whereas I seem more logical, organized, open minded, under control, empathetic and detailed, focusing on the present much more than the past or future, and feel very functional for most all things when doing those things by myself without others near, she would admit she is the opposite of me for most of those things, yet we both get our needs met, nevertheless. Yes, her worrying about the same things over and over again, or stressing over things that have not happened yet to her liking, can sometimes be draining, but I realize she does not do this on purpose, or for any type of attention or to get more.. I always knew she had another condition besides the original ones given. It's clear her genetic disorganized, hyperactive, inattentive and neurodevelopment genetic issues are causing much of her difficulties.

In her case, the later ADHD and PTSD diagnoses, and earlier GAD diagnosis seemed most accurate, as they explained everything from my analyses and seventeen years of observations in all settings with her, and as all the treatments for the other conditions she was diagnosed with failed miserably and did not explain many other signs and symptoms. She has not ruled out Autism though she says, as she has so many traits of that, and as she says she really is introverted, has many sensory issues, too, and has many obsessions where details can show up then. As for I, I was diagnosed with AvPD and OCD growing up, after leaving home at age eighteen, yet a medical professional a few years ago suspected some Autistic condition without me even suggesting it. She did know I had two Autistic sons though. I would not be surprised if I had Autism or not, as I could make a convincing case either way, as I have no fine or gross motor issues, any sensory issues other than being slightly stressed by large sounds and being very vigilant and observant of everyone around me. As well, I have a variety of typical common interests, but can excel usually at many things I try because of patience, high-stress threshold and an ability to be highly focused there. I am withdrawn looking, with poor eye contact, and very much into detail and some structure, yet I can be very open minded, spontaneous and able to empathize much too. So, her and I still have questions for ourselves, too.

So, in your case, I would recommend you consider neuropsychological testing to see if any additional diagnoses could explain things, or to rule in, verify, or out things. That trained neuropsychologist did about 15 to 20 tests on her, a few hours each day over two visits I believe, but I am unsure if your insurance covers it. He told her all her issues centered around severe ADHD, saying all those other doctors were negligent to not get her such testing sooner. As well, I am unsure if you currently feel able to handle working at any job to substantial gainful levels. If not, then you may consider applying for disability benefits, too. The process could be nightmares for anyone with executive function difficulties, depression, fears, trauma and anxiety, so this though has to be factored in as well, to get a support person or lawyer to assist you. In my case, I could help my wife there, in filing all the forms and making her case there, and as to be upfront: if she had attempted doing it herself, she could have had so much distress over that and did something that would not be constructive, as seen by her many attempts over the prior years where I had to undo all that damage, from her doing impulsive or not-thought-out things that went against accepted or typical practices, policies, rules and procedures.

Sorry for the length here. I just had to make some important points that I failed to mention before. I will be wishing you the best as we certainly relate.

 

[AylaM]

@1ForAll
Though I have gotten a lot better with it – I think when a situation is emotional for me, I revert to thinking in very black and white ways and it is nearly impossible to convince me of the grey until I have calmed down. I’m catching myself generalizing more and more particularly in my speech, I tend to be more open in my thinking. I wonder if it’s a panicked response to feeling rushed in conversation. I like to take time to express my thoughts, and talking to most people puts a lot of pressure on me to respond immediately before I have formed my thoughts. So I am constantly speaking in ways I do not actually think and it can be very embarrassing to come across in a different way to how you feel. I jumble my words and mix two sentences together a lot because I feel so rushed, it makes me laugh now but man do I feel ashamed at the time…
“Thanks for coming in on Saturday.”
“That’s good!”

I was a very impulsive person before I became so anxious (I still am in some ways, particularly with my speech and with my eating), I wouldn’t be surprised if my erratic behaviour in my teens is what lead to my BPD diagnosis. I may still have BPD on top of Autism, but I’m pretty sure the two overlap in some areas.

Perhaps on top of all the things you’ve mentioned, those particular medical professionals may also lack curiosity, and passion for what they do. I think if I were in such a position, I would be utterly fascinated by anybody who walked through the door, and I’d want to figure them out in depth and with accuracy. Rather than seeing it as just a job or something to compliment my ego, it would have a meaningful purpose to me – to help people understand themselves and live better lives for it, and to come to better understand myself and the world around me in the process. I don’t know what it’s like to be a medical professional though, maybe it’s easy to lose sight of such things.

You hit the nail on the head for me with that part about not assuming how the patient acting in one setting says everything, and also the parents not being forthright. I cannot help but be polite and pleasant to people, and I feel even more pressured to be so when it is a professional I’m dealing with. That says nothing about my troubles, but all through my notes are comments about how I presented, not accurate notes of what I was trying to get help for. Any time my parents were involved they’d lie or skew the truth, my father once lied about his recent abuse towards me while I was sitting right there in the meeting. I stormed out and cried by the road in frustration.

I’ve always struggled with authority too, to me it is a game people play. When I was younger, I didn’t see anyone as above me or below me. Now, any person is just as important as the next even if I don’t like them. It’s caused me trouble at work, definitely at home, and even while I was attending school. It sometimes causes me to feel anxious because I know people act certain ways around authority figures but I don’t always know what to do with myself.

I am similar to your wife in that I lose interest in people who do not try to understand or relate to me, I just choose not to use my time on people I don’t mesh well with. Which is unfortunately most people I meet, though I don’t meet an awful lot of new people anyway other than at work. I try not to get into confrontations anymore because while I may feel passionate about whatever it is at the time, I nearly always end up embarrassed months down the track, especially when I figure out what set me off and that I probably had a choice to react differently. When it comes to people I am extremely close to it’s a bit different, I can be so very blunt and hurtful without intending to be, but I don’t feel the same embarrassment I do with strangers and acquaintances – it’s more of an anger and frustration with myself that often gets taken out on the person.

I understand how draining it can be to have someone around you constantly worrying, I’ve seen how worn down I can make people. I’m glad for both of your sakes that you understand she doesn’t do it on purpose or for attention. If I had anything that worked I would share but I am still on the hunt myself, and things don’t work the same for everyone.

Do you think you and/or your wife will get assessed for Autism one day? From what you’ve written, it definitely sounds like a possibility for both of you to be on the spectrum.

I would be interested in neuropsychological testing, I am unsure if it’s available in my area or covered by the free healthcare we have in my country but I will look into it. I already receive the disability allowance here, my support person kindly agreed to be my agent and help set it all up, and since I work a bit I don’t think I receive the full amount. I would get quite unwell if I wasn’t working at all, due to the boredom and lack of movement that I’d usually get at work.

No worries about the length, I’ve enjoyed reading your writing and I apologise for taking so long to get back to you. I read your post last week but sometimes I just run out of energy and need awhile before I feel I can write again. Thanks for your well wishes, I’m hoping the best for you and your wife (and kiddlywinks)!

 

[1ForAll]

@1ForAll
Though I have gotten a lot better with it – I think when a situation is emotional for me, I revert to thinking in very black and white ways and it is nearly impossible to convince me of the grey until I have calmed down. I’m catching myself generalizing more and more particularly in my speech, I tend to be more open in my thinking. I wonder if it’s a panicked response to feeling rushed in conversation. I like to take time to express my thoughts, and talking to most people puts a lot of pressure on me to respond immediately before I have formed my thoughts. So I am constantly speaking in ways I do not actually think and it can be very embarrassing to come across in a different way to how you feel. I jumble my words and mix two sentences together a lot because I feel so rushed, it makes me laugh now but man do I feel ashamed at the time…
“Thanks for coming in on Saturday.”
“That’s good!”

I was a very impulsive person before I became so anxious (I still am in some ways, particularly with my speech and with my eating), I wouldn’t be surprised if my erratic behaviour in my teens is what lead to my BPD diagnosis. I may still have BPD on top of Autism, but I’m pretty sure the two overlap in some areas.

Perhaps on top of all the things you’ve mentioned, those particular medical professionals may also lack curiosity, and passion for what they do. I think if I were in such a position, I would be utterly fascinated by anybody who walked through the door, and I’d want to figure them out in depth and with accuracy. Rather than seeing it as just a job or something to compliment my ego, it would have a meaningful purpose to me – to help people understand themselves and live better lives for it, and to come to better understand myself and the world around me in the process. I don’t know what it’s like to be a medical professional though, maybe it’s easy to lose sight of such things.

You hit the nail on the head for me with that part about not assuming how the patient acting in one setting says everything, and also the parents not being forthright. I cannot help but be polite and pleasant to people, and I feel even more pressured to be so when it is a professional I’m dealing with. That says nothing about my troubles, but all through my notes are comments about how I presented, not accurate notes of what I was trying to get help for. Any time my parents were involved they’d lie or skew the truth, my father once lied about his recent abuse towards me while I was sitting right there in the meeting. I stormed out and cried by the road in frustration.

I’ve always struggled with authority too, to me it is a game people play. When I was younger, I didn’t see anyone as above me or below me. Now, any person is just as important as the next even if I don’t like them. It’s caused me trouble at work, definitely at home, and even while I was attending school. It sometimes causes me to feel anxious because I know people act certain ways around authority figures but I don’t always know what to do with myself.

I am similar to your wife in that I lose interest in people who do not try to understand or relate to me, I just choose not to use my time on people I don’t mesh well with. Which is unfortunately most people I meet, though I don’t meet an awful lot of new people anyway other than at work. I try not to get into confrontations anymore because while I may feel passionate about whatever it is at the time, I nearly always end up embarrassed months down the track, especially when I figure out what set me off and that I probably had a choice to react differently. When it comes to people I am extremely close to it’s a bit different, I can be so very blunt and hurtful without intending to be, but I don’t feel the same embarrassment I do with strangers and acquaintances – it’s more of an anger and frustration with myself that often gets taken out on the person.

I understand how draining it can be to have someone around you constantly worrying, I’ve seen how worn down I can make people. I’m glad for both of your sakes that you understand she doesn’t do it on purpose or for attention. If I had anything that worked I would share but I am still on the hunt myself, and things don’t work the same for everyone.

Do you think you and/or your wife will get assessed for Autism one day? From what you’ve written, it definitely sounds like a possibility for both of you to be on the spectrum.

I would be interested in neuropsychological testing, I am unsure if it’s available in my area or covered by the free healthcare we have in my country but I will look into it. I already receive the disability allowance here, my support person kindly agreed to be my agent and help set it all up, and since I work a bit I don’t think I receive the full amount. I would get quite unwell if I wasn’t working at all, due to the boredom and lack of movement that I’d usually get at work.

No worries about the length, I’ve enjoyed reading your writing and I apologise for taking so long to get back to you. I read your post last week but sometimes I just run out of energy and need awhile before I feel I can write again. Thanks for your well wishes, I’m hoping the best for you and your wife (and kiddlywinks)!

Thanks. I know both my wife and I too feel rushed when we speak in person to others, and when we have to reply before we are ready, but we react differently than each other there. For her, she will speak in generalities, and perhaps it is partly if not mostly genetic, but a big part of her replies to others seems like a need for her to avoid confrontation by agreeing with them, or avoiding topics that require much thought. She grew up with a very mentally abusive, cold and serious mother who often wanted answers right away, and in her preferred way. My wife can come across as talkative and friendly nevertheless.

In my case, I will reply back in-person to a question or comment usually in a very concise one or two sentence, relevant way. Although I may appear much less expressive than her, I will use more polite words than her, and answer specific questions or comments made, as I think I am more empathetic or able there, while my wife will often avoid sensitive topics, or be not able to have much discussion that involves giving much personal opinions, knowing that could cause a need to discuss details, make her more vulnerable and/or because of not wanting to get too attached to someone because of black and white thinking.

So, what you said about jumbling words up words when you talk is interesting, as the reason you and anyone does such can be very telling. There are many different reasons persons can do that: low self-esteem; slower processing times, cognitive issues and disorganized thoughts (executive function issues), fear of critiquing or rejecting others, a need to express as perfectly as possible, fear of offending, impulsiveness, impatience, black and white thinking, etc. So, I bet most here in this forum understand those difficulties expressing too, assuming most have one or more of those issues.

Yes, with regards to some medical professionals that could also lack curiosity and passion regarding patients and/or medical matters, besides the other things mentioned, and so this could be another reason why some do not seem as helpful to patients. If I were a doctor, too, as I have strong empathy and caring abilities, I would take pride in wanting to learn everything about any medical situation, and unlike many medical persons, I would want to help as quickly as possible in concrete individualized ways. I would likely have had to have my own private practice, as I am not a big believer necessarily in following traditional protocols, but would tailor any plan after listening to the patient, and as often protocols are set up not necessarily with each patient's best interests in mind. I think many medical persons do indeed get into the field for ego and financial reasons, more so than for better reasons.

As for whether we will get tested formally for Autism, we are not sure as of yet, as in my case, I am not sure if it would change much as I am my worst critic and would do my best whatever condition I had, and as a diagnosis, or lack of, would not change what I thought about myself and those others who have such. I am not the type who would get treatment for any condition, nor do I need support, as I focus on assisting, being objective, and giving one hundred percent effort for everything I do.
I think I likely am Autistic, from what I know, as I have many traits, and as my very poor upbringing likely caused some ASD traits to hide more, and a few NT stereotypical traits to appear there instead.

As for my wife, I think she feels no doctors would give her the Autism diagnosis because the current DSM criteria and stereotypes of Autism would rule her out. For instance, she is more spontaneous than structured, mostly general than detailed, and she appears extroverted and expressive from the surface, and can understand nonverbal cues well, yet once others get to know her and her behaviors in many environments, many more ASD traits appear, and as for women traits can appear at times differently. Although I appear more Autistic from the surface, she definitely has more traits common for those with executive function or Autism, and as her online test scores showed. I would have tested higher for Autism at age three to 10 or so, before I had to hide more who I was, and appear different in some ways.

 

[AylaM]

@1ForAll
Very interesting to draw so many parallels between your life and mine, I agree with much of what you write and experience a lot of the same things you and your wife do. Maybe it’s the same with many people here, I’m still getting used to the forum. Nevertheless, it’s reassuring to know there are other people who understand on a much deeper level than most.

If you do decide to get tested formally, I wish you all the best with that. I can understand your wife’s reservations about being a female who presents differently to the stereotypes. I was fortunate enough to see someone very clued-up, but I have read and heard it can be a very difficult process for females.

A lot of people I’ve talked to about Autism who suspect it in themselves say a similar thing about a diagnosis not changing much for them. I’ve also had a relative say if she received a diagnosis, she wouldn’t take it well at all and feels it would be a really bad thing. I’m not sure how that works because if you have Autism, you’re living with it whether you have a diagnosis or not, I didn’t understand how being formally told you are would ruin your life if you already have it. But of course, everyone thinks differently.

I’m sorry you’ve had to hide who you were/are and appear differently in some ways, I can relate to that too. Let’s hope as the years go by there’ll be more understanding and less of a need to keep that up